BAD NEWS

[CrocodileShoes]

If you followed my recent post, you'll remember that I was ecstatic to have had a consultation with the team at Royal Marsden Cancer Clinic, where I was told that my PET scan of June, my PSA of June (4.4) and my overall good health meant that they felt I needed nothing more than dexamethasone and there was no rush to treat with anything stronger - certainly not the chemo that I was fearing.

Last week I had an MRI scan at RM and I was called yesterday to say that the earlier PET scan hadn't shown a small 'spot' on my liver. On top of that, a sudden doubling of my PSA means that I have an urgent consultation on Wednesday, and I've been told that chemo is now a matter of urgency.

So, within a month, I've gone from 'your life is not in danger from this cancer' to full-scale panic. Needless to say, I've been knocked sideways and now all the 'putting your affairs in order' scenarios have come back to the fore.

I know that many of you have had good experiences with chemo, so I'd like to get into a positive mindset. My belief is that, while my overall health is relatively good, I'd like to treat what appears to be a newly aggressive cancer with an effective counter-attack. To that end, I have a few questions and would welcome your experiences:

1. Is there a difference in efficacy between oral chemo vs infusions?

2. What kind of side effects can I expect? (I know that everyone responds differently) Should I, for example, cancel work trips to Portugal and Australia in the coming months?

3. Are there adjuvant therapies that would, for example, attack the liver spot, or get the tumour load significantly lower?

4. Is there any truth in the myth that my immune system will suffer as a result of chemo?

5. I experienced some urine blood this weekend. I've been told that the prostate is pushing against the bladder wall and causing UTI-like symptoms. Is chemo likely to relieve that?

Any advice you veterans can offer at this stage is gratefully appreciated. I need to feel hopeful at this point, more than anything.

Love to everyone fighting this insidious disease.

[onemichael01]

Ask about LU-177 PSMA treatment infusions

[CrocodileShoes in reply to onemichael01]

I have done. The Vision trial requires patients to have failed chemo before they can be accepted.

[Peeffervescence]

I’ve had chemotherapy. Infusion. While on Lupron and Nubeqa. My PSA went from 52 to undetectable. Your immune system is affected during treatment but recovers after. You could also get radiation for the liver spot. After chemo.

[CrocodileShoes in reply to Peeffervescence]

Thanks. That's encouraging!

[Cooolone]

The issue may be that tests and scans aren't really showing what's going on, and yet your PSA is active. This may open the path to a systemic therapy that will hopefully attack what ever cancer cells are active. As a reminder, the Chemotherapy agent attacks any "fast" growing cells in the entire body. Skin, hair, and other similar cell structures suffer. Your blood will be monitored to check kidney, liver and other functions including your bodies ability to fight infection, etc. So yes, your body will be compromised in many ways, but everyone is different, so there is no real definitive as to what "might" happen. For instance, my experience was neuropathy in feet and fingers, hair loss, and metabolic issues with glucose control. Most have subsided since (2021) but some still linger. And my PCa became active again within 12 months... Very confusing at the time that it would, or could. Again, everyone is different.

Use search too as there's a few things that can be done to help mitigate some of the side effects. Also, I suggest discussion with your team regarding the use of Triplet therapy per the Peace-1 Trial that extended the efficacy of Chemotherapy to almost double the timeline in mono or double drug use.

Anyways, good luck!

Best Regards

[Tall_Allen]

1. There are no oral chemos for PCa.

2. I know many who keep on working.

3. You can ask about SIR-spheres

4. It might. Neulasta can prevent that.

5. Maybe.

[alohapickle]

My spouse had a lot of peripheral neuropathy (PN) in his feet (mostly) and hands. But it didn't reveal itself until after 3-4 treatments. It did not get better even though his last chemo treatment was in January. He had docetaxel and cabazitaxel. I know some folks do ice during infusions. My spouse's MO said there were no studies showing ice worked. But the literature says the PN effect is cumulative. So IF the ice works, you want to give it a try at the beginning and during all the treatments. I know others in this group have done ice treatments. Best to ask them about their experiences. I wish you the very best. No fun, but this group is very supportive so that helps.

[fast_eddie in reply to alohapickle]

No experience with chemo here but I have read of people using ice. Hands and feet, ice chips in mouth, and even a 'cold cap' on your head presumably after getting a short haircut. This is what I would do were I doing chemo. Typical that an MO would say "there were no studies showing ice worked.". Heck, if it causes no harm and might ward off neuropathy or hair loss why not try it? Doctors don't know everything and shouldn't pretend that they do to the extent that they discourage sensible precautions.

[Nusch]

Fasting one to two days before and one day after each cycle helped me a lot in reducing side effects. Fasting might also strengthen your good cells and weaken cancer cells so that chemo is more effective. And red blood cells are better protected, so you don’t go so low. If 0 calorie intake is too heavy for you, go with 250-300 calories / day for these three days. This helps your stability and blood pressure.

[rhenrick in reply to Nusch]

Yes, fasting works. My husband did this and had no side effects. He did not go so low as 300 cals, I think around 400 or so. Google Tanya Dorf as she created this fasting mimicking diet.

Also, take an antihistamine on the day before, of and after on the day of the infusion to help ward off nausea.

[Irun]

sorry you are here . I too go to the RM , diagnosed nearly 9 years ago had chemo initially , PSA went from 342 to now 0.22

I still travel lots running ultra marathons although occasionally it has made sense to take it easy . Not sure who your consultant is , mine has been CP since the beginning , outstanding . I wrote a book “dead man running “ about my journey (on Amazon) if you want to know exactly what I went through . I did not have a spot on my liver however . Don’t over think what’s happening and enjoy every day that you can .

[CrocodileShoes in reply to Irun]

Wow, tht's truly impressive. Would you be OK with me DM-ing you?

[Irun in reply to CrocodileShoes]

Of course

[CrocodileShoes in reply to Irun]

Apologies. Meant to add. I'm with the Cancer Research Team at the Oak Centre, led by Professor De Bono. My 'home' consultant is at St James in Leeds.

[Flaxseed]

Hi there, have a look into fasting before your chemo. It is counter intuitive but there is research being done to show that fasting before chemo weakens cancer cells and therefore makes the chemo more effective. The fasting causes healthy cells to go into a protective state and helps reduce side effects. I have advanced prostate cancer. Was first diagnosed in September 2018. At that time my PSA was ‘off the scale’ at 2,681. At the time I didn’t even know what PSA should for. The cancer had already spread to my spine and neck - where I effectively had a broken neck. I was as given a bone supplement drip and hormone injections and advised to ‘put my affairs in order’. I found out later that I was given 1 - 3 months ‘guarded’ (if you’re lucky). They gave me radiotherapy on my neck and I was sent home in October 2018. I had 6 lots of chemotherapy where my PSA came down to 13.3 and, ultimately, to a low of 0.54. About 20 months ago my PSA started to rise. When it got to 1.6 I had more radiotherapy - this time on my Prostate. It made no difference. PSA continued to rise to 2.6. I was given Arbiraterone (Zytiga?) and my PSA came down to 1.6, 1.3, 1.2 then up a bit to 1.3 (roughly monthly blood tests). I decided to try a four day fast before the next blood test. Result was 0.99. So I decided to repeat the fasting (four days) every four weeks to align with my blood tests. Results have been 0.82, 0.69 and 0.64. I am not saying it is the fasting - but I am a walking experiment! I told my oncologist what I have been doing; I made sure that my blood were all ok each time (liver, calcium, kidneys, full blood count, potassium etc) and I eat a ‘half’ breakfast each morning of the fasting period to go with the prednisone tablets that require to be taken with food. Then it’s water and black coffee for the rest of the 24 hours. It might not be the reason for my results but while my PSA continues on its current path I’m going to keep to the routine.

[CrocodileShoes in reply to Flaxseed]

Fascinating. Can I ask how long you fasted for prior to your chemo cycle. And after?

Regarding your continued experiment with fasting and PSA, is there not a danger that you are 'fooling' the blood tests - as your PSA may be higher during your periods of 'normal' diet?

Also, 4 days with just a half breakfast is pretty hard core. Did you have to train your body to ignore the hunger urges?

[Flaxseed in reply to CrocodileShoes]

I didn’t fast before my chemo because I hadn’t heard about it back then. I was then told about it but as my PSA was already doing ok I decided to hold off on the fasting - thinking I would do it if I had further chemo. When my PSA looked to be flatlining after 3 months on the Arbiraterone I decided it was worth a shot. I was worried I might be fooling the tests but I don’t think so. After 2 days, your body stops producing glycerin - and that starves the cancer. So the next 2 days sees some cancer cells weaken and die - allegedly. Because I then follow up every 4th week I think that helps ensure it is not me fooling the system. My next blood test will be in 3 months and I intend on continuing to do the fast every 4th week… I’ll let you know how it goes! I didn’t train my body but when you want to live your mind becomes a powerful tool!!! I switched to a plant based diet in 2019. Now that was hard!!! But again, I wanted to try anything to help… lots of so called anti cancer foods - flaxseed, broccoli etc etc. again, walking experiment! Lol.

[CrocodileShoes in reply to Flaxseed]

I look forward to hearing the results of your test. Please keep us informed!

[Flaxseed in reply to CrocodileShoes]

Hi there - yes I will let you know! Good luck with the Chemo...! Mine was generally tolerable, when I had it. On the second session, I thought I was having a heart attack so they stopped the session and started it at a slower pace - and all was fine thereafter and it did me a lot of good. Basically I've had nearly 5 years that I never thought I would see and I am still fighting it...Stay strong!

[CrocodileShoes in reply to Flaxseed]

FInal Question: Are you currently still taking Abiraterone, or is the fasting your sole monotherapy? Should your PSA rise, could you have further chemo infusions?

[Flaxseed in reply to CrocodileShoes]

Hi there - yes, I am still taking the Arbiraterone (and the prednisone tablets that one takes alongside - well, actually, an hour after). So that must be about 8 months now. I also still have the 3 monthly hormone injection. I take Alendronic acid tablets (one a week) because the cancer has spread to the bones; and 'Ad-Cal' daily (calcium supplement).

Yes I could have more chemo - that could be the next option if/when the PSA starts to rise again.

Like a lot of us, I'm sure, I see it that the longer I survive the more chance of something new coming along...!

(The Arbiraterone tablets were not available to patients like me on the NHS in England a few years ago - Scotland seemed to pioneer them for advanced late stage prostate cancer patients, I believe.)

For info, I was 56 when diagnosed (61 now). While I remain 'strong enough' chemo is still an option. I am carrying a few pounds more than the recommended weight for my height (12.5 stone and I am just under 14 stone) - that is another reason I don't mind doing the fasting. I want to bring my weight down to the low 13s rather than the high 13s.

Don't worry about asking questions by the way - anything that is useful from my experiences I am happy to share - it can be hard to find stuff out generally...!

[Flaxseed]

p.s. I read through the other replies and think you are being given sound advice! Hope the chemo goes smoothly and best of luck.

[profsailor]

I went to London for Lu-177 when I could not get it in the US. Dr. Amy Eccles at the London Clinic arranged and supervised my treatment. She and other physicians and staff were wonderful. I could have gone to several locations in Germany but chose London. It was expensive as a private pay patient but worth it. My PSA went from approximately 9 to 2 within a few weeks after the first treatment.

Over 14 years, I have had radiation, surgery, and last year, docetaxal. The chemo was very difficult for me. One week out of three was spent mostly sleeping, and left me with some neuropathy in fingers and toes. My PSA increased dramatically over 7 months following chemo. Thus, I went to London for treatment.

Now, Lu-177 (Pluvicto) is again available in the US and I am treated at Duke. I will receive my 2nd treatment there (3rd total) this week. Last week, PSA was .06. I wish you all the best on your journey.

[Ian99]

Hi. I’ve been following your case as there are similarities with my own. Sorry to hear about that bad news. I’ve just had a PSA spike and doubling of T, so am likely heading for chemo pending scan results.

What I take away from all the replies is further confirmation that ice helps mitigate peripheral neuropathy and fasting before and after sessions is definitely worth a try. Good luck.

[MarkBC]

I did chemo immediately after diagnosis, over 5 years ago. It wasn't fun but wasn't nearly as bad as I expected. Chemo and the ADT really knocked my cancer back. PSA of 103.0 dropped to below 1.0 and has basically stayed there ever since. My bone tumours have not been visible for a few years now.

I was a teacher and was told not to go into work during chemo because my immune system would be compromised and I should avoid places where it is easy to catch illnesses. Schools certainly spread colds and influenza. Personally, I would avoid airplanes and public transit during chemo as well.

I don't know the science behind fasting and am always skeptical of new ideas that do not have proper scientific analysis supporting them. I would do research and talk to my oncologist first. It makes sense to me that you would want your body as healthy as possible before and during chemo. Adding the stress of fasting doesn't make sense to me.

I had a liver spot on scans as well. My oncologist said benign spots on the liver are commonly seen on scans. By comparing multiple scans over time, they can determine whether it is cancerous. My other tumours have changed and disappeared while the liver spot has remained the same. Therefore, we know that it is benign.

Good luck with your chemo and don't fear it. I had all the common side effects that eventually went away after chemo. It can work really well.

[rhenrick in reply to MarkBC]

The fasting causes the healthy cells to "sleep" ie not so active so they are under the radar to the cancer cells that are primed to seek out active cells. This was how it was explained to me. Please google Dr Tany Dorf or Dorff to read about her fasting protocol re: chemo.

[CrocodileShoes]

Thank you Mark. That's really encouraging! As an educator for 30+ years, I understand your decision to keep away from the germs factory. How many infusions did you have? And did the fall in PSA happen gradually? Did the chemo continue to work after your final infusion? I had been wondering about the liver spot. I was probably drinking more alcohol than I should and wonder if that might have caused it. Needless to say, I'm currently tee-total and would expect I'll stay that way all the way through chemo.

Thanks for the encouragement.

[Brysonal]

Sorry to hear. I am following your case and also in the uk but my mets were bone with nothing on the liver

I travelled to Finland to get 3x early Lu-177 whilst hormone sensitive paying out of pocket

I then had 3 lots or Docetaxel and Finland iced me - head, hands and feet and I had no neuropathy or hair or nail loss.

I did the 24 hour before veg soup fast ( and 12 hours after). Was sick once on third lot ( communing to Helsinki) but worked full time and hosted daughters 30tg birthday 1 week after first chemo.

currently NED and 13 months undetectable PSA ( I have has a lot of treatment) Had a PSMA PET scan last week for baseline position ( hopefully it’s negative ) as considering no ADT injection in Sept but continuing on an Apalutamide monotherapy and careful monitoring to see what grows with no ADT!

Good luck with the chemo ( I know my 3 is it the standard 6 but I’d try the ice and fasting for sure. )

[rhenrick]

And the antihistamine tablet on the day before, of and after the chemo infusion.